To my Sister Girl, Sweet Pea, and Punkin’ Head:
A year ago today, I was anxiously awaiting your arrival. I could not sleep knowing that the next day would change our lives forever. I spent hours praying, talking to you, and rubbing my huge stomach. I was so scared for your fragile little body to enter into this world. As excited, as I was to meet you, I was equally nervous about the journey you were about to take.
I will never forget your sweet little face (well, the small part I could see). You had a perfect little button nose and a head full of dark hair. You arrived at 8:44am and weighed in at a whopping 6 pounds and 1.5 ounces. They quickly wheeled you away to Children’s Medical Center and your wonderful Daddy was with you every step of the way. Your daddy is so proud of you! You have been his Precious Princess from day one. You were so sick—sicker than anyone thought. The doctors and nurses worked quickly and diligently that day to help get you to a better place. All the while, I was stuck in a recovery room in a different hospital. My heart and arms ached for you. I hated that you had to go through so much on your “birth day,” but I hated even more that I could not be with you.
|Right after you were born!
|After your first Cath
Waiting to really “see” you for the first time seemed like eternity. Your daddy did a great job keeping me updated, but I wanted so bad to see, touch, and kiss you. I was finally allowed to leave Parkland to come and see you. You looked so small and helpless laying in your little hospital bed. Tears filled my eyes as I got to really take “you” all in for the first time. You were everything I could have imagined and so much more. I reveled in the opportunity to give you a bath and dress you up in your bow and little socks.
|Meeting Mommy for the first time!
|First Family Photo!
|Beautiful Baby from the outside in.
The days that followed were filled with so very many ups and downs. We soon realized that your journey was not going to be typical or easy. You went in for your first open heart surgery on day two and crashed on day five! I will never forget the sights and sounds of that crazy evening. My heart physically hurt as I watched you through the door. Your room was full of nurses, respiratory therapists, and doctors. I was watching your heart rate and oxygen saturation levels drop to nearly zero. I begged God to let you live and cried out to the team to make you better. No mom should ever have to watch their child crash----those memories will forever be engrained in my memory. You are such a fighter and with God’s help, you pulled through. Little did I know what was to come.
|After your first open heart surgery
|Changing your little diaper
|Love those sweet little eyes!
|First time to be extubated!
|Right after you crashed for the first time
You went in for the Norwood on day seven. Your daddy and I, along with family and friends, waited anxiously for you to come out of surgery. You actually did very well post operation and it looked like we would be out of the hospital in no time. Boy were we wrong. Your little body had many surprises for us.
|Norwood surgery time
|Bless your little heart
|You were such a brave little girl!
After recovering from the Norwood, your medical care became very complicated. You had problems with chylous effusions (leaking fat from your chest cavity), problems being extubated, problems gaining weight, problems with kidney stones, gastrointestinal issues, eye problems, etc. You had a few more episodes of mucous plugging in which we nearly lost you. We also had a very scary experience with you in which we were within minutes of having to hook you up to ECMO due to uncontrollable heart arrythmias. You had to spend time in a “grow box” because you did not have the energy to gain weight while being able to keep your body temperature regulated. You were also listed for transplant because your heart was not working like it should. We were told at that time that you would NEVER be a Glenn candidate. As you can see, just in this short little description, your road has been very bumpy. But all during this journey, you have had amazing people encouraging you and more importantly, praying for you. You are so blessed to have such wonderful people in your life. All of the surgeons, doctors, nurses, and therapists have worked tirelessly to help you get
|Into the Grow Box!
|21 days old and the first time to hold!
|Best Daddy in the world!
|Getting bigger in the "Grow Box"
|Check out all of the tubes and wires!
|You were one sick little girl
|Day your were listed for transplant
|Getting Some Gramma Lovin'
|My little Minnie Mouse is getting better!
And get better you did! After almost six month of being intubated, you were finally able to get that nasty breathing tube out. We had so much fun holding you and loving you! You are probably the most loved little girl ever. You improved at a steady rate after being extubated. We were all so very proud of you. We got to move your feeding tube out of your intestines into stomach and start feeding you breast milk. You continued to improve, gain weight, and wean on the amount of oxygen flow you were on. The CVICU team decided that you were ready to move on up to the 8th floor. This was music to my ears. I was so excited because we were told this would never happen until after you got a new heart.
|First bath in a bathtub
|You smile a lot now!
|You got to try cereal
|The nurses threw you a 6th month birthday!
|You got to go outside for the first time!
|You were excited about meeting your little cousin Coen!
|You were worn out after moving to the 8th floor!
You were released from the hospital at the end of April. We were so excited to get to leave the hospital and bring you to a “home-like” environment. You really seemed to like the change of pace. You have slept much better and are growing like a weed. You have had a lot of visitors and have been held a lot. You like to play and have even learned how to sit up on your own, roll over from your tummy to your back, and boy-oh-boy do you like to play, especially with anything that makes noise or lights up.
|Hanging out in the hospital!
|Visit to the Park!
|Swimming Pool time!
|First 4th of July
|You were a ROCK STAR after the Glenn
|Sitting up on my own!
Emma, you have taught me more in your one year of life, than I have ever learned in my 26 years on Earth. This has been the most emotionally and physically draining year, but more importantly, it has been the happiest, most joy-filled year that I could have ever hoped for or imagined. Your precious smile and laugh melt my heart. I hope you always know how truly special you are to me. You are what I prayed for and in your eyes I see hope! You have strengthened my prayer life and my faith! I love our days spent together. You are worth it all. Remember to always be a fighter. Never give up and remember that you have the biggest fan club cheering you on every step of the way. You are an inspiration to so many. I pray that God blesses you with many more years and that you continue to be a light for Him!
You're Special, You're Special, You're My Special Little Girl
You're Special, You're Special, You're My Special Little Girl
I Love You, I Love You, I Love You Because
God Made You My Special Little Girl
I love you to the moon and back and so much more,